Wife undergoing treatment for stage 2 tongue cancer

Hi Jackman,

 

Sorry you are going through this. I only have a few comments.

Firstly, I understand your frustration regarding "no risk factors". I have nasopharyngeal carcinoma. Prior to being diagnosed at 46, I never smoked in my life; didn’t drink (if one can of beer every couple of month qualifies for drinking, then yes, I drink); used to eat “healthy” (more or less); exercised regularly, kept weight within normal limits; no excess of any type (including regular sleep hours, etc). No exposure to toxic substances (except unavoidable factors like pollution), no family history, no known inherited genetic predisposition. Race (I am Caucasian) was not a factor (this type of cancer is endemic among certain population or ethnic origin).

Secondly, the tumor has been caught early; usually this is caught much later, stage III (like myself) or IV. So I wouldn’t (necessarily) blame the dentist, it’s very difficult to catch this in early stages.

Thirdly, these types of tumors tend to grow very slowly, with locoregional spread. I would say 45 days wouldn’t make a big difference and I sincerely doubt would make the difference between stage 1 and 2. Even more, the treatment for stage 1 and 2 would have been very similar anyway.

Not the least, as you will see from other forum members, this treatment, while tough, it is doable (I went through radiation and chemo treatment, details in my profile) and there is definitely light at the end of the tunnel.

 

Hi Jackman....

I'm sorry you find yourself in this forum....but, I can tell you this....you have found the best place in the world for support and information.  The folks here are wonderful!!

I don't think the 45 days you've had to wait between your first Dentist appointment, and today...the day of surgery....made much difference in your wife's disease status.  Most of us have started out going to Dr.'s who gave us antibiotics for weeks, then referred us to a specialist....then the time it takes to get treatment set up.....I started going to the Dr. in January of last year, and treatment didn't start until the 24th of April....a little over 3 1/2 months from the first time I went to the Dr. about a lump in my neck.   

Your wife is going to be ok....you don't say what treatments they have lined up for her, but I can tell you this.  Oral cancer is treatable, and very doable.....again, she's going to be ok!!

p

Jackman12345 said:

In regard to the dentist

The dentist advertises a cancer screening that comes with an 89 dollar cleaning.  We spent 2800 dollars on wisdom teeth removal and root canal but they couldn't "throw in" the screening even with a 3 cm sore present and easily visible?  I need to stop thinking about it.  I just want to run out into streets and scream at people to get checkEd.  Why is awareness of this so low?    More venting       

Jackman
Welcome to our little corner of the world. It's a part of the world we never thought we'd want to visit but once we see how much support we find here, there's nowhere else we want to be.
Before I attempt to answer any of your questions, I have some important advice for you....STAY OFF OF the INTERNET!!! The web sites you are searching may be full of old data and statistics and will only scare and confuse you. I promise you that if you come here for questions and advice you will get the truth and tons of support.

Ok now that we have that out of the way, I'm Billie and it's nice to meet you! I was diagnosed with StageIV laryngeal (vocal cord) cancer-SCC. Like your wife, I never smoked, very very rarely drank and I was also HPV16 negative.
I successfully completed 8 weeks of chemo (erbitux) and 7 weeks of radiation and I am now NED. Treatment is hard, I am not going to lie to you but it is doable. I finished treatment in July 2012 and I will have another CT and PET scan in April. My doctors fully expect those scans to show NED as well.

As far as taking action against the first dentist, that is totally your call but sometimes these growths are hard to diagnose in the early stages. Many of us were misdiagnosed for months if not longer and given antibiotics to try and treat infections or what have you. Then once we are finally diagnosed we waited sometimes a couple more months to start treatment. We all had the same fear as you in that we thought the cancer just had more time to grow. I hope it will relax you to know that it doesn't grow nearly as fast as we think it does. Trust me, I was told that too but the anxiety is so strong that we can't hear it when people try and tell us that. Now that some of us are finished with treatment we are more relaxed and try and help the new folks understand it too.

Being 28 is actually a good thing. Your wife is young and healthy and that will come in handy for getting thru and responding to treatments.
Plus she has you and I can tell you are a caring guy and are going to be very attentive to her, and your baby....congrats on her by the way :-)

It is commendable that you want to find ways to donate to cancer charities and you will have time for that later. Trust me, you guys will want to do anything you can to help with cancer but right now just focus on the task at hand. There will be plenty of time to show your support.

I want to tell you to relax and take a deep breath and I know it's so much easier said than done but please do try. I know right now you are both scared but know that many of us have been there and now have completed treatment and we are fine! There are many going thru treatment right now and we try to be here for them, just as we will for you. You two will do fine, I promise! You found us at a good point in your journey. I didn't find this place until I was about a day from finishing treatment. I so wish I'd had the support earlier on when I had so many questions.

Please come to us and ask anything you'd like, no question is silly or dumb. And remember no surfing the web!

You didn't mention where you are from, maybe we have some members who are close to you and can recommend Dr's or hospitals to you.

Again welcome and relax.
Billie

Welcome...you've come to the right place

Jackman

I am a 2 year tongue cancer survivor.  I had the exact same surgery as your wife (mine was a bit more extensive--l lost 75% of my tongue).     You don't mention anything about checking her lymph nodes.  That is usually done with a neck dissection.  Did she have that done as well ?  If not, that means there was nothing suspicious...so that is a good sign.

Being that her cancer was caught early, surgery may be the only thing required.  In that case, YIPPEE...the worst is over and she will recover just fine from the surgery.

If the medical team recommends radiation treatments and/or chemo, you will find all the answers you need for that here as well.  I am here to tell you that the treatment is doable. It sounds horrid, and on many days it will be, but your wife's cancer was caught in the early stages, so that's a good thing. Plus her young age will help her in her recovery. And she has you on her side, and a new baby to keep her focused on getting through the tunnel and coming out the other end.

If you haven't already seen it, please check out the first entry on this discussion page, "SUPERTHREAD".  This is a compilation of tips and tricks put together by one of our own (Sweetblood) and now managed by Skiffin16.  The Superthread will help ease your mind about many things that are coming at you both at once.

So, ask whatever questions come to mind.  This first part of the journey is the hardest, when you don't know which way to turn. 

best of luck to you both.

Ingrid

Seems odd to say but welcome

Seems odd to say but welcome to the group. I understand your frustration and anger. My husband was missed diagnosed for over three years, that makes a difference. But because three doctors missed it we had no case. It did help my husband to aleviate some anger by checking with a lawyer to see if he had a case. You probably do not have a case but it is worth checking with a lawyer if you want to vent.

As for the cause of the cancer. They can never say definitively what caused the cancer. Mostly they attribute H&N cancer to drinking and smoking but that is due to statistics.

The best advice I can give you is to find someone to vent to and that failing vent on the board. Don't let your anger and sadness build up. You will need to do self care in order to be strong for your wife.

This will be hard for you both but know that we on this board will be here for you and God goes with you.

Debbie

NJShore said:

Jackman

Welcome to the group, sorry we had to meet this way.

My husband was diagnosed with stage 4 tonsil cancer in Oct. 2012, he had robitic surgery on the tonsil and then got neck disection where 3 lymph nodes were involved, two of them no longer whole, and broken open. He's completed treatment and still working on the recovery and weight gain portion of the journey.

When I had strep throat and was complaining about a swollen lymph node 5-6 years ago, Dan showed me one of his lymph nodes - it was the right size, but it was hard. I sent him to a doctor, who gave him antibiotics and sent him home. It didn't get better, but a few weeks later, the doctor had sold the practice to another doctor who he did not like... so Dan didn't follow up. We werent really 'worried' - everyone gets lymph node symptoms occassionally. It wasn't until this past summer, when Dan started to get a gravelly sound in his voice, and the node turned into a huge lump.. then it was panic. If we had paid attention.. if information was out there that people were at such risk.. that every lump isnt' just 'fighting an infection'. What this all proved to me, is that doctors do their jobs, they don't really look out for every patient the way I think maybe they should. I think there are a lot of people here in this group, because they want to be the best self-advocate, or advocate like you and I for our spouses.. they want the best of care. It's sad, but it's reality. And I can't think of a better way to spend energy than learning and sharing with those that need it most, and can teach me what I don't know.

When you spend more time in care, and waiting rooms, infusion rooms, or in a general oncology area, you'll find there are sooo many more patients than doctors, and their time is focus'd on doing their best every day.. hard to accept that they do their best, and we have to fill in some blanks, and make sure they have the right facts and question their decisions, and eventually we get the right care for our loved one.

Doctors are good, but I still trust my gut feeling, and until someone satisfies my alarm and defines what I need to know to get comfortable -- I make appropriate noise. Welcome to the patient adovacy part of 'for better or worse'. It's the most important job you might have in your life time, but you will never regret a moment. The good side effect, is you will enlighten those around you to medicine, and what can happen, and others will benefit from your efforts.

And in the midst of all of this, take care of yourself. You need to be strong for your wife. Fighting the misinformation and lack of knowledge of others will keep you from focusing on what she needs to get through this. Pick your battles, it takes a lot of energy - conserve where you can. Later, you can revisit what didn't work, for now try to focus on what will help.

Just my humble opinion... and strategy to get through this myself.

Kari

Hi Jackman ...

...this is not meant to sound flip in any way ...but if she is in her situation, age and stage 2 are a good place to start.  I'm also going to go out on a limb and say since pathology reports aren't back yet (you said) it may very well be HPV+ (since she is not a heavy drinker or smoker).

This site, especially the SUPERTHREAD which always remains at the top of the page is a grat place to start.  There is another great site called Oral Cancer Foundation www.oralcancerfoundation.org     Great resource for you as well.

I was stage III base of tongue with one lymph node invovled, I was HPV+.  I had no surgery, just radiation and weekly doses of Erbitux (not the old fashion chemo but more of a drub that sensitizes the cancer cells to radiation and prevents them from mutation / splitting thus growing.

I did whishper a prayer your frustration / anger does not get deep roots, it will certainly benefit you on the next few months....deal with that another time when your sandbox is less crowded

Best to you and your wife,

 

Tim

Waiting time

Hi,  My first doctore told me to take antibiotics and come back in a few weeks if they were big.  Then I had a second appointment and a third before I got the dignosis.  I was SCC stage III Left tonsil and 2 left nodes .  I finished rads in March 2012 and till get my 1 year skan in March.  I have been Ned the last 11 months.  Relax and take one day at a time.  It takes a few weeks to get it all started.  The treatment is tought, but doable.  I am well now, back to work and enjoying my life!.  Your life will get better too and come here for support when you need it.   Ann

Jackman12345 said:

Thank you for everyones input

Thank you for everyones input     We got the pathology report back.  Stage 3. Not hpv. Had spread to one node. (Left side disection has been done).  Clear margins.   

Did they say anything about more

treatment?  If so, do come back here.....you can get so much support and invaluable information here...these folks held my hand all thru treatment and beyond.

p